The following is a portion of the text of a story broadcast on NBC Channel 5, Chicago, about IBC, Karen Kirschenbaum, and her mother Marilyn.

Inflammatory Breast Cancer
by: Marion Brooks

September 23, 1999 – CHICAGO — Inflammatory breast cancer is an extremely aggressive form of breast cancer that can be even more deadly than standard breast cancer. Victims don’t always get lumps, making it hard to detect. It is also often misdiagnosed, mistaken instead for an infection, costing weeks of crucial potentially life-saving treatment.

Karen Kirschenbaum was already scheduled for a mastectomy when she discovered the breast cancer she had was actually inflammatory breast cancer, or IBC. It could have been a potentially deadly misdiagnosis.

“If I would have gone in for surgery, it would have spread to my left breast,” she said. “I really believe that I would be dead right now.”

With inflammatory breast cancer, the tumor is not necessarily localized to a lump. Instead, it is in the blood stream and the lymphatic system.

For treatment, the cancer is first shrunk with chemotherapy. “After chemotherapy — and usually patients have an excellent response to chemotherapy — there is often an interval surgical procedure to remove that area of cancer, usually a total mastectomy,” said Loyola breast cancer surgeon Dr. Sheryl Gabram.

But the difference is the order of treatment — chemotherapy, then surgery — instead of the other way around with standard breast cancer. In this case, the treatment protocol is critical.

Too often, inflammatory breast cancer is not even recognized as breast cancer, but mistaken for the breast infection mastitis. “It’s scary because often these women are treated with several weeks of antibiotic treatment before actually receiving the appropriate type of treatment they really need,” said Dr. Gabram.

Missing weeks and sometimes months of treatment can be the difference between life and death.

“You have to be your own doctor,” said Marilyn Kirschenbaum, Karen’s mother. “I know that doesn’t sound right, but that is how I feel. You have to be educated.”

Since her daughter’s diagnosis, Marilyn has become an inflammatory breast cancer activist. She receives letters from women all over the country who say they have been misdiagnosed.

“You must insist on a biopsy. I don’t care if the doctor says it’s nothing,” said Marilyn. “Insist on a biopsy.”

Keep in mind that simple things like a bruise on the breast can be a symptom of IBC. Also watch for warm, swollen breasts; if the skin on the breast is red or discolored or has a thickness; if it is dimpled or itches; if there is shooting, sharp pain; a flattened or inverted nipple; and sometimes, but not always, a lump.

Remember, mammograms don’t detect inflammatory breast cancer symptoms. You are your best defense. “You have to be aware,” said Marilyn. “For all these women who are afraid to get mammograms or do the self-exam — and I know them personally — they’re being foolish.”

Inflammatory breast cancer is relatively rare, occurring in one to four percent of breast cancer sufferers. But IBC activists think it may be more common than believed because it is so often misdiagnosed.